PART V: THE NARRATIVE FUTURE OF ETHICS PRACTICE: CHAPTER 19: NARRATIVE ETHICS, GENE STORIES, AND THE HERMENEUTICS OF CONSENT FORMS.

This article explores how narrative ethics might contribute to the understanding of genetics, medical research in genetics, or human subjects research more generally. The scientific problem with genetic determinism is its simplicity. Rather than the isomorphic formula--that is, one gene=one trait (or, one gene=one protein=one trait)--the pathways from genes to traits exhibit at least two kinds of heterogeneity. The first is a clinical heterogeneity. For example, the same genetic mutation in two people can lead to different outcomes. This is true, for example, for phenylketonuria (PKU), a genetic disease that results from the inability to metabolize the amino acid phenylalanine. If untreated, the disease leads to severe retardation. PKU is also an example of a second sort of heterogeneity, genetic heterogeneity meaning that different genetic defects can lead to the same clinical outcome. So, although PKU was at one time understood, like Huntington's disease, to be a rather simple embodiment of genetic determinism, the story is currently understood to be more complex. Yet despite this growing recognition of complexity at one level, simplistic gene stories depicting human essences and origins continue to be part of both the scientific and the popular imagination.